Thank you

I don't even know where to begin with this post. Today was an amazing day for all of us. We were invited to a little party at DFA (the company where I used to work). It was really nice to see some of my old co-workers, and meet many of the new employees. The company has really been growing. After we had a few minutes to say hello and introduce some of the new faces they had us come up to the front of the room. Paul Wise (the CTO) presented Casey with a check. Many people through out the office had donated their own money and the group ended up raising a lot of money. They gave Casey a check for nearly $8600. We were shocked. What a fantastic group of people. I just can not even begin to express how much this means to us. Thank you so much to everyone at DFA.

Shortly after the presentaion the fire alarm went off and they evacuated the building. It was really hot outside so we loaded up the car so Casey could sit in the AC while we waited for the parking lot to clear. Casey must have been excited to meet everyone and wore herself out. As soon as we got her into her car seat she crashed. She slept most of the way home.

One of the girls I used to work with invited my sister to come as well. It was nice that Megan was able to get out of work and be there as well.

Tim is going to order Casey's chair tomorrow. With the money we had already raised added to this donation we are now able to get Casey everything she needs and still leave some in her savings account to go toward our next stem cell trip later this year.

I just can not say thank you enough to everyone. Not just to everyone that has helped financially, but everyone who has helped in any way. Thoughts, prayers, well wishes, everything. It is so comforting for us know how many people out there care and are pulling for our little princess. We are just so lucky to have so many wonderful people in our lives.

Casey had a party on Saturday too. My mom, grandparents and my mom's husband-to-be came in to town to celebrate my mom's birthday. Casey loves visitors. She seemed to have a good time. After everyone left she was wiped out. She slept better than she had in a long time. Next time we see my mom and John they will be married.

We finally have some prospective respite nurses. It would be great if we find a good match soon. We also have ENT this week. I will post later this week with updates on the nurse search and new doctor. I imagine it will take a few weeks to get Casey's chair. As soon as we get it we will be sure to post lots of pictures. Thank you again, more than I can ever express.

What's Happening...

We met Casey's new Pulmonary doctor this week. He is not close to the house so Tim had to go with us to drive so I could sit with Casey in the back. We went during lunch and they were able to get us in and out pretty quick so Tim was able to get back to work right away. In addition to getting us in and out quickly, the doctor was really good. He was very comfortable around Casey. We have had many doctors freak out when they here her gurgles; this doctor was not freaked out at all. He had some ideas of things we have not tried that may help manage some of Casey's secretions. Hopefully we will see some good results.

We see the ENT next week. They will check Casey's ear tubes. Hopefully she won't need new ones for a while. With Casey's reflux and suctioning we need to be sure that her throat stays healthy too.

Casey was seeing Dr. Bill for her eyes in Santa Monica. Our plan was to go back and see him once a year while we are there for her yearly stem cell therapy. We just found out that in Texas in order for Casey to get her vision therapy started back up that she has to see a Texas eye doctor and they have to give her a Texas state eye exam. I asked around and found a good doctor, but as always they have a long wait. We are going to see the eye doctor in mid March. The program that provides Casey's services is already working on getting a vision therapist lined up. Once we get in to see the doctor and have the state paper work done then the therapist should be ready to start right away.

Later in March we will take Casey to Houston to meet the last of the team of doctors. Her previous ortho went to school with and highly recommended him. I did some internet research to check him out. We are excited to meet him. We really hope that we like him as much as we liked her previous ortho.


We are working with Casey's PT to get her a stander. We have one to try out that Casey seems to like. Hopefully we can get one ordered for Casey soon. We are also getting ready to order Casey's chair.

A friend of ours works at a hospital in Indiana. The hospital did a fundraiser for Casey and raised over $500. It is really going to help out with the chair. Thank you so much to everyone at Pinnacle Hospital. Thank you to everyone else that has contributed as well. The chair is going to make it so much easier for Casey to get out and about.

We have some family coming over Saturday to celebrate my mom's birthday. Casey loves parties so I am sure she will have a good time. We were all invited to a party at the company I used to work for on Monday. Casey gets to go to all kinds of parties in the next week. It won't be much longer before she turns 2 and the party will be for her.

I had not been feeling great since my surgery just before the new year. I saw my surgeon about it before we left and she sent me to urology. After all kinds of tests a CT Scan finally showed that I have multiple stones in both of my kidneys. Apparently one of the larger ones on the right side had fallen into a position where it was causing problems. I went in last week and they did a procedure called Lithotripsy. They put me under then used special shock waves to break everything up. Surprisingly I was really sore for many days after the treatment. I actually had the same pains I had with my appendix. I am better now, but it was not fun at all. I have a follow up next week with the doctor. I have to take in the stones that passed so that they can determine what type of stone they are. I drink a ton of water so I don't think that is what caused them. Hopefully they can find out more when they send them off to the lab. I guess we will just have to wait and see. At least nothing ruptured this time :)

Tim has been trying to get back into a regular work out routine. He is going to do the Chicago Tri this year with his brother. He has been trying to get back on his bike, run and swim. It was really hard for him to have to wait so long from his back surgery. He seems much happier now that he is physically healthy enough to work out again.

Daddy's Back

Things are starting to get back to normal around here. Tim got home Friday evening and boy was Casey happy to see him. Overall she was really good while he was gone, but there a few times that she let me know she was really missing her daddy.

We kept pretty busy while Tim was gone. As we already posted we had a small family party for my grandma's birthday. During the week we started our home therapies. Casey had OT, PT and Play Therapy. She starts Speech up this week. So far so good. All of the therapists are really nice and seem really good at what they are here to do. Casey was missing Tim during PT so she was a bit fussy, hopefully she will cooperate a little more this week. We have to see a Texas vision doctor in order for her to get Vision Therapy started. The one we were told to call is backed up. We have to wait until early March to get in. We will just keep doing the vision exercises rsises we learned from her previous VT while we wait.

We have been trying to find a new respite nurse. I went to the Children's Hospital and asked them to hang up a flier in the nurses break room. No calls yet. It has only been a few days. Hopefully we get some interested nurses in the next few days.

We met with the new neuro early last week. That went really well. The doctor is optimistic, aggressive and really wants to help Casey. She was really a breath of fresh air. We went through so much to find a good neuro in Los Angeles. I was ready to redo the entire battle in Austin. I never expected to be blown away with the first one we met. Tim is looking forward to going with us when we go for a follow up in April. I am sure he will really like her.

Casey and I also met her new GI doctor. He to was really good. He wants to work closely with neuro to get Casey a little less stiff and more comfortable. He also wants to try and get her off some of the drugs she has been for way to long.

We were supposed to have a pulmonary appointment this week. The doctor's office called on Sunday to reschedule. The doctor was sick. We won't meet him until the end of the month.

Other than starting up our weekly therapies, and meet new doctors Casey has just been spending time with her dad. He is adjusting to being home. He did surprisingly well. Last time he slept for nearly 20 hours a couple of days after getting back. He took a few short naps and was pretty tired for a few days. He is pretty much back on track now. His luggage did not make it back on the same plain. He got home around 5:30 and the bag did not get here until around 11:30. Casey and I are both glad he is back home. He seems pretty happy to be back too.

I got some pictures from Ken, Jen, Allison, and Madelyn's trip out to Los Angeles before we moved. Thanks, Jen!